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Sunday, July 31, 2011

fly with your dream

There are times when words are not needed because love can touch us in places where mere words can not travel. Then there are also times when honor and praise bring forth a deepening connection and love towards each other.

For my first born," we will cross many roads in our lives that may break us or help us to grow stronger. My love you have certainly showed your strength, as I have. It pleases me beyond words to know that this I have passed on to you. Together we have shared heartache and devastation, only to pick up the pieces and continue forth. Together we have found the true meaning of unconditional love."

It is with great pleasure I embark on the next phase of my journey with my eldest son Zach. In the twenty one years that I have had the honor to watch him grow from boy to man, I have been blessed to see our relationship also flourish. It is with a deep respect, understanding and love that I embrace this young adult before me now. I no longer see before me a child with dreams but an accomplished young man who has openly praised me for helping him to seek out his adventure and supporting his dreams. As he continues to conquer his quest I watch with great admiration. With dignity and pride he has accepted the challenges that have been presented to him. Through sheer determination I have seen him rise from a young boy of a single parent home to become founder and CEO of his own gaming review company "Media Cows". Because of his commitment to succeed and the love he holds in his heart for his terminally ill brothers I have no doubt he will hold tightly the family values that have been bestowed upon him while his business flourishes. So it is with great pride, love and admiration I introduce my beautiful son Zach to the world. " My first born, sore, let your wings carry you far, allow your heart to guide you when you feel doubt and your mind to help you seek all that the universe can offer. "Zach who have dared to stand out alone, you have defied the odds and you took a chance. As you open your arms to the world, it is my hope you will contniue to be an example of compassion and strength. Always stay true to yourself and do not let the doubt of others control your desires. You have witnessed what selfishness can do and you have seen what can be accomplished with love. You are on your way-to greatness

Saturday, July 30, 2011

Glancing at the clock on the wall I noticed it was already a little past 11:30pm. Where did the time go, I thought to myself. I still had a sink full of dirty dishes to wash. The boys had not been given their evening dose of meds yet and laundry laid piled in a heap at one end of the sofa. I knew the dishes and laundry could wait but Cody and Josiah really needed to be off to bed now and getting them to bed by myself was certainly a 45 minute job at least.

I could hear both Cody and Josiah busily chatting while they worked in their Lego room. Entering the room I immediately noticed the new structure that had kept them both occupied the last several hours. It covered half the table. A complex with several rooms and a second floor with stairs. At the top was a light rail running across the span of the building along one side. I am not at all certain how my boys are managing to reach up to such heights. It is just with in the last several weeks I have noticed these few minor feats they have managed. Unfortunately it seems I am seconds behind when they are actually pushing the limits of strength and miss marveling at the extremes. Josiah anxiously pointed out the boarding deck he had built for the passengers to enter and exit. I was overwhelmed with utter amazement at the the detail they had put into this newest design. Feeling compelled to hurry them off to bed I had promised to spend time the next day letting them show me all the amenities the new complex offered.

I heard my eldest Zach come in the front door as I pushed My Josiah in his desk chair toward the bathroom doorway, his timing was perfect. With Zach's help I could get the boys in bed much faster and spare my back from the extra lifting. Zach came to our aid and immediately began to assist Cody with getting ready for bed. I gave a Zach a few instructions on what I needed him to do for Cody. As Zach lifted Cody back onto the desk chair and steered him toward the sink I watched momentarily. Zach laid Codys tooth brush prepped with tooth paste on the counter next to the sink where Cody had been washing his hands. Not exactly what I asked of him. This I surely thought would be requiring my intervening. To my pure surprise Cody reached over and picked up the Tooth brush and began brushing his teeth himself. I stood feeling over joyed. This had not been a task Cody had done in quite a while by himself. Zach stood back smiling at me then at his brother. They both knew what this meant to me and Zach also knew what this meant to Cody. Cody smiled up at me, telling me he was getting the back teeth too. I watched as his beautiful arm and hand worked together cleaning his dazzling smile. It did not matter to me he how this was happening- only that he was doing now. Such a simple task so many of us would not give a second thought about. My beautiful eighteen year old Cody was moving his arm in away I had not seen in so long. He brushed , he swished, he rinsed. Then smiled the proudest smile telling me "I did it mom, you don't have to do everything". A tear rolled down my cheek as I smiled back. One score for us I thought, Duchenne take that.

I do not know if it is in fact Ataluren (PTC) the experimental drug at work or Cody with some kind of adrenaline flow. I know He did not attempt to use his arms the day before. I know we have days when both boys seem to struggle with lifting a fork to their mouths. What ever is happening I pray it will continue. At the very least I will cling to this new hope. The hope that quite possibly we are stalling Duchennes progression.

Saturday, July 2, 2011

I arose from a deep sleep upon hearing my little Josiah softly ask me to come check his heart. I quickly pressed the return call button on the monitor to let him know I was on my way. Without hesitation I was up rushing to his room. Josiah immediately whispered he had dreamt his heart had stopped. Looking into his deep brown beautiful scared eyes I placed my hand gently on is chest. He appeared fine and the beats that I felt seemed some what quickened but not alarming. He asked if he could press the record button on his heart monitor to get a recording, in case his heart was acting up again. I smiled at him telling him yes that was a good idea and that maybe we should send the reading out. Some what relieved he had no symptoms of discomfort and given the fact he had awoken from what most likely was a disturbing dream, I felt myself lesson in concern. But still very heart broken that fear invaded my sons life in so many ways.

Life watch responded fast. Josiah's reading was not out of normal range but did show some increase in pattern. To put both Josiah and myself at ease I decided I would sleep on the recliner next to his bed. I laid a wake for the next several hours listening to his breathing and wondering how frightening this all must be for him. How frightened I felt. Hating how helpless it left me. Also wishing Josiah did not have to live with this added fear on top of living with Duchenne. The roller coaster ride was on again. Only now I had no idea if we were going up or down.

He did not awake anymore that night and in the morning Josiah did not make any comments about his dream. I was tired and still very upset that this new symptom had entered his world. Still though, very pleased and thankful the night before did not turn out to be an emergency episode. I watched as he played with his legos later that morning. Smiling and busying himself with building the cars 2 kit I had recently purchased for him. He seemed no different.

Today sadly though I felt control slipping from us, from me. In spite of every ounce of strength I put forth, Duchenne was gaining. We were losing and it teared me inside to admit. A friend once told me after her son graduated from high school at the age of 18 she felt sadness overwhelm her. While for most young people it was a time for a new adventure, for a child with Duchenne it had a different meaning.

I walked into the room where my Cody was playing a video game. In a little more than a month my Cody would turn 18. Having grown up with Duchenne I felt and understood what my friend meant. A child with Duchenne rarely made it pass the early 2OS. Today I was facing that same fear. The same fear my parents also had too. Unlike my friend though I would see Duchenne take both my younger sons. A reality I could not ignore today. Perhaps it was the new heart monitor making it all seem so much closer. What I did know was unlike my friend we now had cardiac issues attach itself to our already complicated lives.

From another part of the house I could hear Josiah sweetly calling me. Reminding me it was time to send another cardiac reading in. As if by some magic it was the tech on the other end of Life Watch that gave me my hope again. The readings were found to all be in normal range, very good for Josiah, and music to my ears. As if sensing my concern she reassured me every reading so far has been in normal range. I could not help but embrace my sons after hanging up the phone. At least for today I could help Josiah let go of his fear. I could reassure him his heart was beating strong. And possibly for just today the roller coaster ride was at a halt.

All I can say is, I put on my bikini and its complicated. Why you ask- it fits perfect, but I am the fading old. I like my bikini but I am not sure it likes me back. LOL. I want to take it out and show it the world but I am not sure my friends approve.

Over due with my writing and with a very serious attempt at exploring the finishing touches of my book, I once again find myself lost in the midst of events surrounding me.

New relationships have been bubbling up all around. I am so excited for some of my friends and family at finding someone to engage in heart felt feelings with. I have been priviledged with romantic news and announcements. My insight to the romantic happenings surrounding me leave me so much more aware, that, yes perhaps, Love is in the air for some. However drama is even more heightened for others. I've become more and more aware of the people declaring they are in a relationship and "its complicated". This lines popularity has flourished since the Movie "Its complicated". A romantic comedy starring Meryl Streep and Alec Baldwin, who after having been divorced for 8 years flirt with a short lived affair between them. The ending thankfully puts Meryl Streeps love interest toward pursuing a HEALTHY relationship with Steve Martin.

I cannot help but wonder though, the meaning behind all the postings I see lately of, in a relationship and "Its complicated". Are this many people sleeping with their exes but secretly wanting another? Really, did I miss something in my long dating life where it becomes difficult to say to someone I like you and want to see just you. Somehow after our grade school days of passing love notes around- some of us have graduated from "Do you like me" check here yes or no to the popular "ITS COMPLICATED". I find it even more perplexing to see that some relationships existing are over ten years and still complicated.

What is this new relationship status? When did our feelings for someone become so widely complicated? Hoping and waiting for him or her to change is ridiculous. You need to open your eyes. If you are keeping those special feelings a secret it can not be all that good. Those of us in Love want to shout it from roof top not hide it in a locked room. Check the box already and move on. Girlfriends and boyfriends those break ups and arguments are telling you something. It is not good. Lets be honest if it is bringing out the "complicated" announcement, that might be a red flag, if you are hoping for more.

As for me I plan to work out this bikini relationship soon. Neither one of us enjoying the "Its complicated" status and need to commit to each other or move on. Tankini is on stand by.